Albie Aware Volunteer Spotlight: Anne Jacobs

Anne Jacobs in the garden

Mr. Toad’s Wild Ride!  That’s how Anne Jacobs describes her life with breast cancer. “I’ve been battling and living with breast cancer for 17 years,” she says.

2003 / Age 42

Anne was initially diagnosed with Stage 3 triple positive breast cancer in 2003 when she was 42. “I found a lump in my left breast during a self-exam. A mammogram missed it, but an ultrasound caught it,”  she said. These were fast-growing tumors, first two, then three, then five. The surgeon wanted to wait, but Anne showed him a picture of her children and said, “Now! And here’s why!”

A double mastectomy (choosing a prophylactic mastectomy for her right breast) and six rounds of chemotherapy later, Anne thought she was done. “I suspect that a full pet scan would have shown it had already spread,” she reflects. “But that wasn’t protocol at the time.”

Oncologist support

“I learned early on to be my own advocate, and that included finding an oncologist I trusted and with whom I had a great working relationship.” His first question was always ‘How are you feeling?’ Through him, I learned how my body and my cancer seemed to interact. When he left the practice, I had the courage to forge ahead with an assigned oncologist, while seeking a second opinion at UCSF. I trusted the UCSF oncologist and brought back her ‘suggestions’ to my oncologist to form my plan. I had become confident and I knew what to ask.”

No cure

While metastatic cancer can be treatable, it is not curable. It can be treated like a chronic disease. “Some people are on constant treatment like me, while others, if showing ‘NEAD’ (No Evidence of Active Disease), may take a break from treatment. I will never be off treatment. I stay on the current treatment until the cancer progresses and then I change to a new drug combination, hoping that that new combo slows or stops the cancer for as long as possible. I think of it as jumping from one lily pad to another, hoping there is always another one in the river.”

“With my first diagnosis, I said, ‘I will conquer this. What’s the plan?’ But when I got the metastatic diagnosis, I was almost debilitated . My friend, Lynn, helped me navigate and did a lot of research to get second opinions. In 2004, there wasn’t as much information available as there is today.”

Family support

Originally from Michigan, Anne has been married to Chris, an attorney, for 33 years. They have three sons, Colin, 28; Kyle, 23; and Alex, 20. She gave up working as a paralegal to stay home for the boys. 

About Chris, she says, “He’s amazing. Freaky smart. I would never have made it this far without him and the boys. He’s been a rock for all of us.” The family enjoys their two dogs, Cate the lab, and Hercules, a beagle-dachshund mix who is definitely in charge.

Volunteer spirit

Ten years ago, Anne volunteered with a breast cancer organization called Save Ourselves. “We visited high schools and talked with junior and senior girls about breast health and breast cancer. Unfortunately, that program ended due to lack of funding.”

“I generally knew about Albie Aware and became more familiar with their mission when approached by my husband’s college friend, Jim Bowman. Jim is a male breast cancer survivor who was selected to receive Albie Aware’s 2019 Rose Award. I met with Executive Director Amanda Nelson in the fall of 2019 and started volunteering with Albie Aware’s Mission Support Team.”

“I contact people going through breast cancer. I am there to answer questions and do whatever is needed. I’m a good listener and this is a good fit for me.”

“When I was first diagnosed, during my infusion, nurses often put me next to someone they thought needed help. Some wanted to talk. Others did not want to know anything. Everybody handles their diagnosis and treatment differently. You get this diagnosis and it totally rocks your world and you don’t know where to put your feet down.”

The journey continues

“Cancer should have ended my life years ago. I feel lucky and blessed that I am an ‘outlier.’ Five years is normal life expectancy but not guaranteed. Some people live longer than 25 years; I hope I am one of those. There are good days and bad days. I try to eat right, exercise, take supplements. I believe in traditional treatment. I just try to stay healthy and do the best I can.”

“I just had a CT scan last week that showed some cancer and now I need a PET scan. I have been doing this for 17 years. As long as there are new treatment protocols in the pipeline, it gives me hope.”

[Since the interview, Anne learned that her cancer progressed a bit and is on a new treatment.]

COVID changes everything

“Because of COVID, testing takes a lot longer – months as compared to weeks. I must stay on top of it. Blood tests every three weeks when I get my treatment. If something doesn’t feel right, I ask questions. I pay attention. You have to be your own advocate.”

Lessons learned

“I have learned some things along the way. If you have dense breasts, a mammogram may not show anything. Ask for an ultrasound. Also, ask your doctor for a post-treatment screening. Just ask a lot of  questions and keep asking. Always bring a notebook with you to appointments; you will not remember what is said. Even better, bring someone with you to take notes.”

Anne emphasizes that this is a time to be as positive as you can be but also honor the days when you just want to cry or be angry. Family members will react differently and have varying

needs, and this can be hard to approach especially when you aren’t at your best. Look for support that fits your needs. “Do research, but don’t look up survival statistics. The data is old, and technology and new treatments are being discovered. If you don’t like your oncologist, find another. Let them get a sense of who you are. Make sure they give you protocols geared for you.”

Final thoughts

“Enjoy your life. Take advantage of each moment. I know it can be overwhelming. Sometimes the pain can be too much and getting up and taking a shower is all I can do. Look for the joy in life. Find a moment that means something to you. Work if you feel up to it, enjoy your kids’ sports, watch a funny video, look at the flowers in your yard. Do things you normally would not do. Sometimes you just need to get to the next day.”

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